Tuesday check up

Last Tuesday Shad and left our house about 8:45 to pick up Kathy and Karen from the airport.  We only had a little while before we had to drop them off for their cruise and get to the hospital for Shad's check up.  Luckily we did have a little bit of time to visit with them while we did a Starbucks run, and then sat in the car to catch up.  We figured out where to drop them off, and then Shad and I were off to the check up with the oncologist.  I knew that Shad was low on something (either blood, platelets, or both) because of the way he had been acting.  He was overly grouchy and would get angry really easy.  He was a little more tired then usual, and a bit pale, but not to a point of being really concerning.   They checked his vitals, Jo accessed him and drew his blood, and then we waited for the results.  After waiting for a few minutes, the oncologist came and got us.  We went into his office and he checked him over.  After checking Shad out, he called Trevor and I closer, and told us to look at what anemia looked like.  He pulled down Shad's lower eyelids, and they were very light.  He shined his light into Shad's mouth and showed us the inside of his cheeks which were also very pale.  He said, now we wait to see how bad it is (if he would need a transfusion or not).  While we waited for the blood results the doctor let us know what the plan was for the upcoming week.  We would see if he needed transfusions that day, and then would come for another follow up on Friday to check everything before the weekend.  He wanted Shad to do a check in with the audiologist to see how things were going with his hearing before the next round, as well as another 12 hour urine test to make sure there is still good function there.  He also let us know that we were going to do one more round before we do the next set of scans.  We chatted a bit longer, and then a corpsman brought the lab results.  The doctor took one look and immediately was like, well, he needs blood and platelets, and we will be admitting him to do the transfusions right now.  We had expected he would need something, so it wasn't a huge surprise.  We were admitted to the pediatric floor for the afternoon, and told we could leave once the transfusions were complete.  It took a couple hours to get the blood products ready for him, and then we had to wait several more for them to transfuse (it takes 4 hours for red blood cells, and 30 minutes for platelets).  We ended up being there for about 9 hours total.
When we got to the floor we noticed that Shad's friend Janae was there again, so I stopped by to chat with her mom and see how they were doing.  It turns out Janae had had a seizure (or something like it) at the store the day before and had been brought in by ambulance.  Her mom was very stressed by the event, and was having a hard time.  I guess that Janae had turned blue, and was not breathing for a bit.  No one at the store had helped, and her mom was very upset.  She said that she thought she was gone, but thankfully she came out of it.  I was kind of glad we were there because she had no car, and no clothes.  I was able to give her a ride to the store to at least get a few clean things, and some food.  It was really good for me too, it is nice to have someone to talk to who is really able to understand what I am going through.  We talked about death, grief, making the most of each day, memories and treatment plans among other things.  It really was wonderful.
Unfortunately I was a slacker and didn't take any pictures this day, but here is a pic I never posted of the last time Shad got platelets, we were in a room with a bed this time, but you get the idea.

Round 2, the rest

About 8:00 on Saturday morning I finally dragged myself out of bed and got going.  It was a pretty lazy morning, I snuggled with Shad for a little bit and we watched his ipad.  The nurse came in and started his next chemo about 11:00.  He started feeling yucky a lot sooner this time around, and didn't eat much for days 2-7.  Once his chemo was done for the day grandma and grandpa worked on getting him to eat something and let me take a little nap.  Once he finally ate a few bites we were able to go out and play for a little bit.  There was another little boy there who definitely wanted to be all up in our business.  I like kids, but this one rubbed me the wrong way.  He was a bit annoying and kind of rude.  His mom wasn't feeling well, so she was resting in the room.  Anyway, he and Shad played for a while before we all got sick of him and headed back into the room.  We must not have done anything too exciting the rest of the day because I don't have any pictures, and I don't recall anything else.

I made this for Shad, and he thought it was pretty awesome!

Sunday Shad woke up excited because daddy was coming back that day.  Grandma and grandpa once again worked on getting him to eat something while I took a shower and got dressed.  They offered item after item and he continuously refused.  Finally grandpa offered bologna off of the sandwich he had brought for lunch.  Shad perked up and agreed to it.  He ate two slices of bologna before we ran out.  All I know if that I was nauseous, bologna is not what I would pick to eat.  Chemo started again at 11:00 and went for 2 hours.  After chemo I began trying to get Shad to get dressed and go for a walk or go out and play but he wasn't too interested.  Finally he decided that he would walk downstairs to watch for daddy once he was on his way.  When we got back from that I realized that my military id which had been in my pocket no longer was.  Trevor and I went in search of it, and to ask at the main desk if anyone had turned it in.  Luckily someone had turned it in to security, so that was good.  We went back upstairs, Shad did a puzzle, and then we played Disney Uno.  After that we went back in the room and got ready for dinner.  I think you can tell from these pictures that Shad is not feeling well, he definitely was not his usual self.  Prior to going home the nurse let us know someone was going to be leaving one of the bigger rooms the next day and we should be able to move over there.  We were pretty excited about that.  I helped get Shad in bed, and then I went home with my parents to sleep for the night while Trevor stayed with Shad.

one of the nurses gave him a coloring book with tattoos

you can tell he is not feeling too great

a birthday present from grandma doggies brought out his smile

as did playing legos with daddy

Monday my mom, dad and I went back to the hospital.  Trevor let us know that Shad had thrown up a little bit that morning.  I was happy to see that we had one of our favorite nurses, and she had decorated Shad's board really cute.  Once Shad's chemo started my mom and I went to run some errands.  I had decided to make some hats for some people we had met at the hospital, their 2 year old had been diagnosed with leukemia the week before, and so I needed to get some yarn for that.  We were also looking for some fabric for a project I am conjuring up in my mind.  I couldn't find what I wanted for that, we will see if ever happens...  We picked up some lunch on the way back to the hospital.  While we were gone the other room had opened up, so Trevor and my dad had moved everything over, and got the new room all set up.  We ate lunch, played Headbandz, and then Shad played on his ipad for awhile.  He wasn't feeling very good, but we wanted him to get out of bed for a bit so we said we should get dressed and go for a walk.  He flat out refused multiple times.  Finally, I asked if he didn't want to for a walk, or if he didn't want to get dressed.  He said he didn't want to get dressed, so I told him he could go in his pjs.  He was more than happy to go after that.  We went up to the top floor and watched for airplanes for awhile, and then we went down to the main floor, walked around outside a little and then went back to his room.  That pretty much wore him out, so he got in bed and hung out there the rest of the evening.

Tuesday Trevor had duty so he had to go to work.  He left bright and early, luckily Shad and I were able to sleep longer.  Shad was feeling really yucky, but he was excited because his friend Janae was coming for chemo that day, and he had a gift to give her.  He just wanted me to snuggle him in bed for awhile while we watched a movie.  When grandma came she and he snuggled in bed for a bit.  While Shad had chemo grandma and grandpa put up the decorations that people from grandpa's work had made and sent for Shad.  He thought they were pretty awesome.  After chemo Shad got dressed so he could walk down to Janae's room and give her the gift he got for her.  (sidenote: Janae loves One Direction and has several posters that she hangs in her hospital room, Shad has seen them in the past.  When we saw some One Direction things at Wal-mart he got very excited and said, "look mom, it's Janae's boys!"  We bought her a little stationary kit that had pictures of them.  Later we saw a One Direction bear at Build a Bear, so we had to buy that for her as well.)  As he was getting dressed he threw up some more, but he wasn't going to let that deter him from going to see her.  We walked down, and he gave her the present.  She was very excited, as we had hoped.  Her and Shad hung out for a bit watching Star Wars on the ipad, and then decorating with her new One Direction stuff.  After a bit Shad started looking a little worse for wear, so we headed back to our room.  Shad rested on the bed, threw up the apple he had eaten, and then just felt yucky.  He threw up again, and so his nurse gave him some benadryl which knocked him out.

Wednesday Shad seemed to be feeling a little better in the morning.  He played with grandpa for a while throwing his stuffed animals back and forth.  After he got tired of that he and daddy took turns playing games on the ipad, and watching movies.  We also played some more Headbandz (I think we played this at least once a day).  We were all happy when the chemo was finished...done with round 2.  That afternoon my mom and I went to the temple, it was really nice, and exactly what I needed.  We came back and I finished working on my project I had started on Monday.  Luckily I was able to finish late that night!  There was a little bit of throwing up this day as well.

Thursday Shad seemed to be feeling much better.  He woke up and drew some pictures for Janae.  The chemo makes her really sick, and she was feeling pretty down.  He was bouncing around, we were able to unhook him from the fluids and take out the needle a little while before we left.  We packed all of our stuff up and waited for the magic time.  They didn't want him to have the Neulasta until that evening, so I agreed to do the shot at home.  We walked down to Janae's room and Shad gave her the pictures he had drawn.  It is great to watch both of them light up when they see each other.  I wrapped up the hats that I had made, and found a card that could go with them.  I hope they helped brighten that families day a little bit.  I can not imagine living at the hospital for weeks on end with a two year old and a 3 month old.  Finally it was time to go home, so we gathered our stuff and headed out.  Shad had been doing well that morning so we weren't too worried, but about halfway home he started looking a little ill.  We asked if he was ok and he said yes, but a few minutes later he threw up.  Luckily there was a towel sitting next to him, and I was able to pull that over on him so he and the car seat stayed pretty clean.  We got home and relaxed and enjoyed being home.  Shad threw up again a little bit later that night.  We put him to bed and hoped he would be able to sleep it off.

Round 2, Thursday and Friday

Thursday morning we went to clinic to get Shad's counts checked and make sure that he was all clear to start chemotherapy the next day.  We got the ok, and directions to be back to the hospital by 7:00 that evening.  The oncologist didn't want the nurses to have any excuse not to give Shad the steroid shot right at 9:00.  We went to pick up Trevor's suit for the wedding from Jos A. Bank, and then the three of us got some lunch at Panera.  We headed home where mom and dad packed, and Shad played with grandma, grandpa and Jayce.  Grandma, Shad and I went for a walk to mail my dress back at the UPS store, while Trevor stayed home to finish up his homework.

Darth Vader Yoda Mickey Mouse got to come with us

That evening we checked into the hospital at 7:00.  Unfortunately they were pretty busy, so we were put into one of the smaller rooms.  There is only one bed in those rooms with only enough room for one pull out chair/bed.  There are also two doors, less lights, and a smaller main area window.  Shad was already accessed from that morning so it was pretty painless to get him hooked up to the fluids.  We played pool ball, and other toys for a bit, and then got him ready for bed.  It was decided since Trevor was going to be out of town the next two nights I would go home to sleep that night, so once Shad was in bed I left.  

The next morning my mom and went to the hospital with my dad and Jayce close behind.  By the time we got there Trevor and Shad had already gotten the birthday legos out to put together.  They were about halfway done with the rancor pit.  One of the nurses had brought a cake in for Shad's birthday which was pretty sweet.  Once Trevor and Shad finished the lego, Trevor and Jayce got ready and left.  About 10:30 the nurse came in to get Shad all hooked up to monitors and prepped for chemo.  Unfortunately the monitor wasn't working so she had to go in search of another one.  She was able to find one, and they got him all hooked up.  Chemo started about 11:00.  The first day he gets his Taxol which is run over 24 hours.  This is probably the hardest day for him, because he is not allowed to get up at all.  He and I (mostly I) started in on his other birthday lego, Jabba's Palace.  About 3 hours later that was finished.  We played cars memory, and disney headbandz for awhile, and then my mom and I left and went to Joann for a bit.  She wanted to look for some fabric for a baby blanket she was going to make.  I bought some yarn for a project I have been working on, and that was about it.  We picked up some dinner and then headed back to the hospital.  When we got there grandpa let us know that Shad's resting heart rate was kind of low(normal for his age is between 80 and 120, at the time his was between 60 and 80), so they doctors wanted to do an EKG.  The nurse had come in to do it, but the machine wouldn't work.  She let them know that she needed another one, and they said that they would get on that.  They weren't too worried because he was still perfusing well, and his pulse ox was still good.  His blood pressure was good as well.  

My parents left around 8:30, and they still hadn't come to do the EKG yet.  Shad was asleep, and I surfed the web and watched some shows for a bit.  About 9:30 the nurse came in with the EKG machine.  She got Shad all hooked up, at some point during the process he woke up.  He thought all the wires were awesome, and when she was finished the nurse even let him help with pulling the wires off.  They told us they would show it to the doctors, and then they would come in at some point and let us know what they thought.  By this point his heart rate was even lower, fluctuating between 50 and 70. The nurse came in a bit later and let me know that the EKG had looked fine.  They still weren't too concerned.  He isn't hooked up to monitors all the time, so they thought that possibly his resting heart rate was normally low and we just didn't know.  About 11 I got in bed, but was having trouble falling asleep.  Every time the heart rate went below 60 the machine would beep and flash an orange light.  Eventually I dozed off, and was awoken after only a few minutes by a doctor who was examining Shad.  She let me know that they were a little concerned because his heart rate was staying lower and lower, his blood pressure was beginning to lower, and his respirations were low.  At that point she said that they thought he was ok, because his pulse ox was still good, he still seemed to be perfusing well, etc.  Of course being the mom, there was no hope of sleeping after that.  I laid on the bed and watched that monitor for the next several hours.  Luckily, the nurse had talked to me, and I knew that she was out at the nursing station watching the monitors as well.  She told me that she was going to bother the doctors as much as she had to to make sure he was taken care of and safe.  That was very reassuring for me.  They called the oncologist to see if they should take him off the chemo, but the oncologist thought he was ok at that point.  A little while later after a lower blood pressure, and lower heart rate the nurse and a doctor came in to let me know that they were going to stop the chemo.  He had already had more than 2/3 of the drug, and the doctor thought that would be an adequate dose.  Once they got it turned off, and the regular fluids going I watched the monitor awhile longer.  He seemed to be doing a little bit better, so I was finally able to calm down enough to fall asleep.  That was about 5:30.  Shad decided that he wanted to be awake and ready for the day about 6:30, but I gave him his ipad and he was content to watch a movie in bed while I dozed a while longer.  

More to come...

Star Wars Party

Shad woke up bright and early yesterday morning, rolled over to face me (daddy was on the ship, Shad was in my bed), and said, "I am so excited because today is my party!"  Unfortunately I had to tell him his party was not for one more day.

This morning he woke up bright and early, came in and said the same thing.  Lucky for him today really was the day.

I had scoured the internet (pinterest) for some fun ideas, and luckily there were a lot out there.  I began preparations Friday night by making a banner, and a Darth Vader for a game.  

Idea from Lemon Squeezy here

Idea from Lemon Squeezy here

Friday Shad and I filled the pinata, painted the lightsaber pinata hitting stick, finished the pool noodle light sabers, and cleaned up his toys downstairs.  Trevor and I blew up balloons last night, did the last bit of grocery shopping, and went to bed.

This morning we went to pick up the cake.  I found this group, cakes against cancer, and signed up to get a cake for Shad.  The volunteer, Melissa,  who made his cake did an amazing job, and he loved it!

We got home, finalized some things, and it was time for his party to start.  As kids got here, we played outside, then came in and played with balloons, and then played with some star wars masks I had printed out from star wars.com.

Then we played the shoot Darth Vader with silly string game in the backyard.  The dollar store silly string went quickly, but the kids seemed to love the idea anyway.

Next we pulled out the pool noodle lightsabers and went to town.  We hit balloons with them.  We hit Darth Vader with them.  We even hit each other with them (luckily there were no tears).

After the games we ate lunch, hotdogs, chips and pink jello salad.  After lunch we went out front to hit the pinata.  Shad was super excited for this part.  I made the stick with a wooden dowel and blue glitter paint.  It took two small containers of the paint to fully cover the stick, but Shad thought it was super cool, so I guess that made it worth it.

Then it was back inside for presents and cake and ice cream.  Shad got some fun dinosaur transformer type toys, Jake and the Neverland Pirate duplos, and a talking Teenage Mutant Ninja Turtle.

Finally, before everyone left we went back into the backyard to take a group picture in front of the banner.  Unfortunately, the wind took a toll on the banner, it fell down multiple times, the stars and letters kept falling off, and as you can see we lost an E somewhere.  Oh well, I tried.

Happy birthday sweet boy, we sure love you!